I’m just sorting out my Amazon wishlist for Christmas this year (always useful to help particular members of the family out!) and realising what a difference a year makes.

This year has not been without its challenges. Some stroke-related, many not.

But my Amazon wishlist gave me cause to pause this morning.

You see last year, I’d started becoming so concerned about the future and my finances within that, that I put cat food and cat litter on my Amazon wishlist. Nobody got any ‘cat stuff’ for me for Christmas though, and I wasn’t surprised. Even I knew it was a kind of weird thing to put on there. But the subtext of that, for anyone who’d really, really thought about it, was probably, “Please Lord, I’m really getting worried about having enough money to look after my cat. And he’s my best buddy and I don’t think I can cope with losing him too.”

I had just moved cities. To a new place with smaller jobs that I hoped would lead to a smaller life this post-stroke chick could better manage. I had just found a little rental flat for us to live – cat accepted by Landlord – a harder feat than you might imagine. But I didn’t have the connections to even try too hard to freelance, so I needed to get a job. Quickly. And I didn’t know how that would go, seeing as I didn’t even really know how many days a week I could realistically work.

I know I was lucky even then. I may have saved for many, many years, but at least I had the ability to get the job to do that. And I was not going to starve. And I would have spent my last penny on the cat, so neither was he. But I was so scared of having to spend all that money because of a job I could not get post-stroke. So scared that it was the beginning of the end of the post-stroke cushion that my savings and my exit from previous job had provided. And so scared that I’d have to find a new home for my silly-beloved cat because I couldn’t really afford to look after him.

And I do love my cat. He was an accidental rescue on Christmas Eve two years ago. My little post-stroke buddy who hung out with me while everyone else was at work. He still follows me from room to room as I move around the house; waiting for me to come home, and meowing loudly (or ignoring me like a teenager) when my day out has been very long.

And now where are we, a year on?

In a gorgeous little Victorian house that the bank and I own between us (them more than me right now, it has to be said!). With a garden. And a little garage. On a lovely little street where, from the right spot (and only the right spot) you can see rolling hills and church steeples abound. Making new friends. Albeit slowly.

And my cat? Well, he’s curled up in the crook of my knees as I type, belly full and peaceful in his new house that the job I started in January this year paid for, in the house that the savings I didn’t spend enabled, with the mortgage paid by that job I started in January. The job that I started in January isn’t so little after all (um, we even taped a TEDx talk last week!), and takes me back to the old city at least once or twice a week. It’s not easy, and the system it sits within can be utterly lousy, but my closest bosses and colleagues are just amazing people.

So for every moment I spend thinking, “What would have happened if this hadn’t have happened?” I also try to thank my lucky stars for jobs and homes and colleagues and unfailingly marvellous friends – and the cat.

I’m actually a-wondering if he should get his own Amazon wishlist this year.

My cat… say hi!

p.s. I am very aware I need to put up a post about some of the challenges of having a full-time job post stroke, not least the upsetting saga around parking issues which caused so much trauma. I realise that I am doing my stroke-colleagues a disservice by not blogging about these issues, which I think I have to let happen and pass before I blog on them because – remember – I have to protect actually keeping my job! I will do this. I will write about them. But I’m saving it for another day.

I’m putting an 8hour time delay on this being published before I even start typing. It’s because I actually know some of you who read it and I can’t bear the thought of an email coming in about it. But I need to write out, as getting things down is often getting things out, if that makes any sense.

It’s Monday morning. I am tired. Tired enough that if I think about it, or how I’m going to get through the day, I cry. The tears are there, just at the edge, waiting to spill. Sometimes the odd one escapes, and then I get on with it.

And I need to work today, so I will have to get on with it.

Why am I so tired? Because sometimes I ignore the fact that my brain is screwed and do stuff anyway. And this was the first weekend in ages I did that. And in fairness to myself I also kind of forgot. Well… I didn’t. But I didn’t think it would really still be like this. Or something. I don’t know.

On Friday I was driving for a good 4 hours in all for a meeting. On Saturday I did brunch and a movie. In the evening I should not have gone the 200 yards around the corner to the pub for a glass of wine. I knew it at the time. I really did. But when the alternative is not doing something nice and staying home with the cat… well I just did. Stupid me. Wasn’t my best two hours, wasn’t the best addition to the weekend.

Yesterday I wanted to meet some friends a couple of hours away, because one of them has flown in from Australia and it will be the only time I get to see her. I wasn’t going to go to church but even I can’t deny someone important a trip to church so we did that first. And then, inevitably we didn’t lunch before we went so stopped in a pub to grab some food after we’d met up and then one isn’t home until 8pm. Which may not sound very late but, secretly, or not so secretly now, that’s easily my bedtime on a Sunday night to make sure I’m ready for a week ahead.

When my alarm went off at 7 I knew today was going to be a problem. Luckily I realised I can work from home.

Now I just have to figure out how to do the actual work. Because being brain vacant doesn’t lend itself to creating budgets, controls matrices and giving reported opinions that impact other people’s lives for a little while.

And then there’s the evening event I have to run. Before I have to srart again tomorrow.

Sorry, I know it’s been a while and I didn’t mean to neglect you for quite so long. I’ve been a little busy with the new job.

As you know, I started a new job with a rather well known firm in January. I want to talk about it a bit, but I’m going to ask you to forgive me first for not being very specific on some of the details. There is a good reason…

Those of you that know me personally know that, despite this blog, I’m relatively private about things that matter. For that reason my name is never posted and my friends know not to name me; my workplace has never been named and those who love me will protect my anonymity that way. But also there are real dilemmas — or maybe they are just in my head — around an employer (or future employer) knowing too much about what really goes on.

By that I mean that it’s one thing for your boss to be aware that you’re balancing issues to get through things, but you get to choose who else does or doesn’t know on a need or want basis. And also I wouldn’t want the hand that feeds me to feel exposed by anything that my own experience might reflect on them, inadvertently or otherwise.

Which is all my long-winded way of saying that if you’re going to comment on this one, please please don’t include my name or my workplace!!! THANKS!

So…

I started in January. My days went like this:

07:10, alarm goes off. 08:10, leave the house. 08:30 start work. 12:30 (ish), 30 minutes to get a sandwich. 17:30 leave office. 18:00 Get home. 18:10, eat toast. 18:30, go to bed. Repeat five times. Stay in bed or on sofa as much as possible at the weekend. Repeat continuously.

Yes, really.

It’s a well known fact that many stroke survivors, even ones like me lucky enough to really get more-or-less properly well, often suffer with severe tiredness. It certainly gets better (as those who will remember when I couldn’t stay awake more than a few hours will attest) but this new routine felt taking a million steps back. I had no life. I couldn’t make new friends in my new city. I had to give up netball as I just couldn’t do it. Toast was about all I could be bothered to ‘cook’.

The impact of tiredness goes further than having to sleep, of course. The problem is that by day 4 or so, one gets a bit fractious in one’s head and has to treat every day like it’s PMS day… for those of you fortunate enough not to have to deal with that one, for some of us there is one day every so often where nothing is ok. For me, on those days, which are increased in numbers per month somewhat, I have to constantly remind myself that the source of the problem is X and not what is apparently irritating me to get through it, which is knackering in itself. Then I start reverting to losing words so I can’t say exactly what I want to say. Then I lose sentences and it all goes a bit downhill.

The good news? We fixed the worst of it pretty easily, over the course of a couple of months! Yes, thank God! My doctor did blood tests and it turned out the combined forces of blood thinning and being a particular brand of female meant that instead of being occasionally and mildly anaemic, I was so anaemic they telephoned me during an evening while I was at an ex-colleague’s leaving drinks in another city to ask me to go in straight away for an blood transfusion. The actual fix for that bit? A permanent supply of iron tablets. How easy was that?

What’s more I’d come of the Q10 supplements that had helped so much with energy because they made me, basically, want to jump off a bridge at certain points in time. (And yes, it took a while to isolate them as the factor). But one of the Stroke Forums started talking about Krill Oil and it turns out that the Krill Oil gets rid of the negatives that the Q10 seemed to cause for me. It’s £40 a month all in on top of the other stuff, but it’s so seriously worth it!

So between iron and Q10 and Krill, I got my evenings and weekends back. Sort of.

It’s so exponentially better than the first couple of months – it’s been nearly four now – that I don’t see it as that much of a hardship (His mysterious ways??!) but I still go to bed about 21:00 on weekdays and sleep by 22:00 ish. Though I’ve also reverted to that post-stroke annoyance of then being awake for an hour or two around 03:30 which doesn’t help. But that means I get my weekend days to do what I like. Evenings, it seems, just remain a bit of a challenge. Sometimes when I am in my old city for work during the day – which happens often – I see a friend in the evening because I am there and I can. But it always bites me on the bottom the next day and I’m learning I can’t do it unless I think I have an exceptionally light day following.

I don’t think that is going to change. The key issue is really not my outside-work-time at the moment, since I’ve just chosen not to worry about that until I’ve properly settled into the job. But it does mean I have to work quite hard at managing timelines and other people’s expectations around me working outside sensible hours just because they do (or are late delivering something). That might sound ok to you but, like I said, it’s not who I feel I am and not the person I want to be at work. It’s just the way it has to be for the time being, in this job anyway.

I have no choice but to work. But I do have choices about how I work and the life I choose to pursue. I chose a serious company that brings the potential for serious hours and stress, but I get to choose how I work within that company and the boundaries I set.

That sounds reasonable but bold, right? It doesn’t feel like that. You see it’s not the person I’ve always been and it’s not the person I am yet comfortable being. I once had an employee who went home on the dot of 17:30 every day, only delivered what was expected and would never put themselves out for anything. It drove me up the wall, even though he technically did nothing wrong. I guess it may have been more the attitude that came with it. I don’t think I’m quite like that. I do put in extra time but it has to be on my terms for me to be able to get up and in the next day.

Luckily I have two extra-ordinarily understanding line managers and a couple of other equally understanding managers to work with. I also have some really amazing colleagues who are delightfully supportive (and that’s not dependent on any brain-bashed issues!). I don’t think they really always get it – in fact often they don’t even know about it – but those that do (and particularly the bosses) always do their best to let me set my own boundaries, which I rather appreciate. Sometimes I see they don’t realise something and I choose not to enlighten them as often as I choose to. We’ve also established that where possible I work from home – a big fat armchair – on Wednesdays to break up the week. With the advent of Skype, conference calling, screen-sharing and, by virtue of the fact that I do many things outside the regional team remotely anyway, I can do almost anything from home and often people don’t even know that’s where I am.

Basically, it’s a balancing act.

Post-stroke my life is a balancing act. Literally and figuratively. In order not to literally fall over I balance my world the best I can. Some weeks I do well, others I have my best friend reminding me no job is worth everything, especially one where no one ever dies as a result!

And, do you know what? I have a friend two friends at work whom we shall call Em and Lo. Em and Lo are both new mums. They are both juggling the need to work full time and be the mums that they want to be at home. They have to manage their before work routine to a tee. They have to leave exactly when they say they need to leave else their babies are in trouble. They do often pick things up after their babies go to bed but, do you know what, they really shouldn’t have to.

What I’m really saying is, it’s not just me – or us – who have a hard time making things work. It’s not just having had a stroke that causes these kinds of issues.

Everyone has their stuff. I was just fortunate enough not to have much before, so maybe it’s just my turn.

I’ve blogged before about Jill Bolte-Taylor. She’s a scientist who studies the brain. So when she realised she was having a stroke herself at a relatively young age, she found the whole thing quite fascinating. Anyway, there is a TED talk (see below as it’s worth posting twice) and she has a book that’s widely available: “My Stroke of Insight”. But someone recently posted a PDF of whole book to a Facebook stroke group so I’ve included that link too.

After the stroke I took three months before going back to work, initially part-time. But I left the role exactly 6 months after the stroke. Something I never would have predicted before it. Then I finished a Masters degree and did some freelance work. I graduated in July, just after my house – which I rented – was sold. So I had to make some really big decisions. I feel the need to buy a house so I can pay it off over time and have some security. And I couldn’t do that anywhere I actually wanted to live in the city in which I lived (as an indication, the relatively ordinary two-and-a-half bedroom house with a tiny courtyard for a garden that I lived in sold for £820k..!). So I needed to change the way my world worked to some extent too.

So I moved to a place where I only knew a couple of people. I had coffee with anyone that would have coffee with me. And within a couple of months I got a job offer from a really big firm that needs a specialist in both what I used to do for a job and what I studied at university, and are willing to have me based in the city to which I moved.

Do I really want to be in that place doing that job? Honestly, I have no idea. Some days yes and some days no. There is somewhere else I’d rather be but that didn’t happen; and for Christmas and New Year I’ve been back in my old city feeling no particular reason to go back to the new one much before my work start date. But it’s city that is loveable, there are people that are lovely, and there is a salary that will work for house buying on offer.

Today I have to go see their medics, by chance in my old town seeing as that’s where I am this week. I know they can’t un-offer me the job – the bits of law you learn are interesting! It’s because I ticked the box to say I need ‘reasonable adjustments’ which by law they have to provide. It’s not much: a high backed chair for when I spend a reasonable amount of time at my desk, and the note that I’m going to (a) stick reasonably close to my contracted hours – not my old natural style but it’s going to be my new one so I’ll have to work that out and (b) I’m going to hold them to the offer of working one or two days from home each week. Those of you who know me know I hate working from home. I really do dislike it. But I want a life outside work too and to have that I need to balance the one inside work to make sure that can happen.

In reality, everything I want to do will be compromised, of course. But without winning the lottery, what can one do?

About a year after my stroke I went to a Women In Business lunch. I sat next to a woman who ran a residential care home for people who’d had brain injuries. The stroke came up and she asked me what meds I was on. I told her I’d just been switched from Warfarin to Aspirin.

“Ah,” she said, “You’ll make your own mind up on whether you want to stay on that your whole life.”

I didn’t know what she was talking about but I didn’t say so. My neuro says I am on it – just 75mg a day – for life. So I just did what we all do. I went home and googled. I do that a lot.

It seems that long term use of aspirin may have side effects. It might, for example, contribute towards anaemia and stomach ulcers. It might also save me from half a dozen other cancers. In short, there are pros and cons. Quell surprise.

I’m still on the aspirin, in case you’re wondering. It was just one of a number of times when I had to do my own research and make my own decision about a drug. Every few months or so I have to do it with something else. So access to balanced information is important.

Anyway, the point of this post is not aspirin. It’s about the fact I was contacted by a chap called Jeff Jocoy from a website called DrugWatch.com (please don’t grace them with another visitor). Jeff wanted to ask if I’d include a link to their site raising raising awareness on the side effects of Pradaxa (that link goes to wikipedia).

Now, I belong to a couple of forums for younger people who’ve had strokes. From what I see Pradaxa is mentioned by some in the US but I’ve not come across anyone taking it in the UK. That in itself isn’t a surprise. NHS v private healthcare. It happens. So what is Pradaxa?

We all know we should not rely on Wikipedia. But we all know everyone relies on Wikipedia. (In fact when I asked my first neuro about whether i could use a particular drug I caught him looking at wikipedia; “Seriously? I already checked that.“) So if you want info, go ahead and look at Pradaxa on Wikipedia. I can’t promise it’s right, but it is more often than not – and it’s unlikely to be biased or unbalanced… a point to which I will return.

Anyway, Jeff wants you to know more about what DrugWatch think about Pradaxa and wanted me to post a link. [He didn’t mention this in itself may improve their Google ranking since the Google algorithm ranks you in search terms, in part, against how many other Google-liked sites link to you for a particular phrase.]

I told Jeff I don’t offer random links. I know first hand what it’s like to be hit with loads of pro/anti/other information at a time you’re really struggling to keep up on a huge learning curve while, remember, your brain is screwed. But I told him I’d consider a guest blog… which bought me some time to check him out.

Here’s what I learned quite fast after having a stroke. Some people genuinely want to help. Some people have an ulterior motive. Jeff has an ulterior motive.

DrugWatch is a site that contains lots of information. But alarm bells always ring in my mind when a site seems to concentrate on the negatives – and DrugWatch is a negative feeling site. I mean, of course drugs are dangerous. If they can do something miraculous (hello, I’m only alive because someone stuck Heparin in my veins for three days), then chances are they can also do things that are bad. That’s why we have trials and those mile long leaflets that tell us all the possible side effects.

So I looked at DrugWatch a bit more closely. Here’s what it says in the “About Us” section:

“Drugwatch.com is a comprehensive resource about dangerous side effects and complications from commonly prescribed drugs and oft-used medical devices. Our mission is to educate people about medications they take and the devices that are in their bodies and then to provide resources to help people evaluate whether they have a legal case because of life-changing side effects or complications.”

Right. Well, now I’m wondering what this is all about. Is this an information site or some kind of front for something else? So I looked DrugWatch.com up on Bloomberg Business Week. It says this:

“Drugwatch.com is a portal that offers information on diseases, treatments and experiences. The portal targets patients their carers and healthcare professionals. Drugwatch.com is headquartered in Stockport, United Kingdom.”

Which is really weird because the Drugwatch.com website suggests all it’s key people are American journalists (scroll to the bottom of About Us).

So now I’m intrigued. I briefly wonder if I should just ask Jeff what the deal is.

But I’m on a roll.

So I did what we all do… I looked their ‘key people’ up on LinkedIn.

What I find there is just weirder. Instead of finding the people I’m looking for, I quickly wind up looking at people who are working for a company called AMAG LLC. AMAG build content heavy websites and market them for their clients so that the general public will be led to their clients’ sites by their information searches.

Had Drugwatch been created by AMAG so that people would be led to a specific company? And was this company involved in the lawsuits that were mentioned on the DrugWatch site? Because if it does, that feels like a complete “front” to me, and rather underhand…

“I don’t know about the rest of you medical bloggers, but I’ve been getting emails from folks who run a website called DrugWatch.com asking for reciprocal links and promoting themselves as the go-to place for patients to get up-to-date information on medication safety. Tucked into the website is this promise: “We will never accept advertising from the pharmaceutical industry.” Right. Because the whole site is a front for a bunch of Orlando lawyers trying to sniff out potential clients for medication-related lawsuits against the pharmaceutical industry.”

Hmm. Interesting accusation. For my sins, at this point I start to wonder if Jeff Jocoy is even real.

So I googled.

The only Jeff Jocoy on LinkedIn is a construction worker from Texas. There’s also this Jeff Jocoy, whom I’ve never heard of. But weird… a professional and senior “public outreach” person who’s not on Linked In?

How does that happen?

Especially since, if you google him, he’s written to dozens of websites with virtually the same emails and responses as he’s sent me.

So I emailed him and asked him who funds DrugWatch.com. I thought I already knew, but I wanted him to tell me. And he did at least tell the truth.

DrugWatch.com is funded by The Peterson Firm. A law firm that appears to concentrate on class action lawsuits. [That always makes me think of that Matt Damon film where he refers to himself as an ‘ambulance chaser’. Hmmm, must stop thinking about Matt Damon…]

So, where was I? Basically, let me see if I have this right:

Jeff may or may not be the real name of a person who represents DrugWatch.com

DrugWatch.com is a high content marketing site created and run by AMAG

AMAG works for The Peterson Firm

The Peterson firm exists to make pursue legal class actions

Class legal actions are a big money maker in the US

DrugWatch doesn’t really exist outside of a URL. It’s purpose is not to give balanced information, but to harness people into class action lawsuit clients for Peterson

Maybe it’s the British in me, or maybe it’s that I had a stroke and all and my brain is addled but, if all this is true, I have a few messages for Jeff:

I’ve seen Erin Brocovitch: I don’t have a problem with class actions per se. They aren’t a ‘thing’ here in England but we don’t mind big companies paying for mistakes. And, well, we really love Julia Roberts.

We have the BBC here: it’s not entirely perfect but we’re really proud that our main news service tries to make sure that what we hear is balanced and unbiased. It conditions us to hate one-sided information since it rarely presents the whole truth. (We love Piers Morgan too, but he never worked for the BBC so please don’t use him as a benchmark.)

If we suspect you’ve been underhand, we won’t like you very much. (Have you heard about the Leveson enquiry? It was big news here.)

The thing is, if Jeff had emailed and said, “Hi, you may not be aware but there is a class action suit against Pradaxa going on. If you know anyone who is on it, or was on it, or might be interested in it, can you send them this link,” I might have done that for him. If the Peterson company just put the information that’s on DrugWatch on their site I’d think that was absolutely a-ok.

But I will not link to the site he suggests. I won’t do it because people who’ve had strokes – actually, no, just people – need balanced information to make life-important decisions. What they absolutely don’t need is biased information masquerading as unbiased information. That’s just not ok.

Key message: if you need life essential information you’re going to be so much better off starting Wikipedia, NHS Direct or Web MD and going from there…

And if you want to join a class action for Pradaxa and you don’t know where to start, please could you pick a website like PradaxaLitigation.com or PradaxaLawsuitCentre.com to research it over one like DrugWatch? I’ve no idea what those companies are like or if they are any good, but at least they have the grace to be honest about who and what they are from their very URLs.

—————————-

Note: I offered Jeff the chance to correct any factual inaccuracies before publication. He didn’t seem too upset and offered the following clarifications:

The Peterson Firm is located in the US. Jeff thinks the Bloomberg article must have been referencing the previous owners of the DrugWatch URL

I nearly called this article “Who is Jeff Jocoy?” but I thought that would be a bit unfair on him personally, seeing as he’s a real bloke. I wish Jeff the best of luck with his aspiring film career and encourage him to make a plan for talking to the media about his Peterson-related Google results if he ever gets famous under his real name.

One of our number has had a one-word tattoo done on her wrist. It says “survivor”.

Others among us have asked if she’d mind if they copied her, such is the strength of feeling about it.

I don’t want a tattoo. I don’t consider myself a survivor in a strong sense of the word at all. But I do understand those rallying – on other message boards – to remove the word “victim” that people often put after “stroke”.

Do I sound like a victim to you? Of anything?

I’ve blogged about the power of labels before. But other than the girls and their tattoos, and someone else pointing out very loudly that he “wasn’t a bl**dy victim, thank you very much”, I had cause to think about it all again the other day.

I was getting bloods done at the nurses surgery attached to my doctor’s surgery. They were doling out flu jabs and, having had a stroke I’m supposed to have one. When that flashed up on the screen the nurse looked at me kinda funny:

“Weird,” she said, “This thing thinks you had a stroke.”

“I did.” I said.

“No, it thinks you had an actual stroke.”

“Yeah, I did.”

“You’re too young for a stroke.”

“Yep. Happened anyway. VAD.”

“God, when?”

“Two years and three weeks ago.”

“Blimey. Wait here a sec.”

And off she went to the nurse in charge to find out what to do next.

“We’ve a young girl here [she said this, I promise!] who’s a stroke victim. She’s really young and she looks great. Do you think she needs the flu jab or not?”

“Well. Stroke victims get it. But let me check.”

Right… Besides the overuse of the word ‘victim’, check what? And why do I get prickly every time someone uses that word in relation to me?

The Oxford English Dictionary defines a ‘victim’ as:

a person harmed, injured, or killed as a result of a crime, accident, or other event or action:victims of domestic violenceearthquake victims

a person who is tricked or duped:the victim of a hoax

a person who has come to feel helpless and passive in the face of misfortune or ill-treatment:I saw myself as a victim[as modifier]:a victim mentality

I suppose that whilst the first bullet point is technically factual, I tend to associate the word with the second or third bullet points. As do, it seems, a lot of my new stroke-made friends. And I suppose that’s one of the reasons we hate it.

When it all first happens you are in other people’s hands. Then you’re either helpless or having to make a conscious choice to hand over responsibility to someone else. I was definitely the latter; I fought to stay in charge even though it was flipping hard work until I finally had a neuro who told me exactly what was going on and that he was “taking me back to his hospital”. That was 19 hours after I got to the ED so it had taken some time for everyone, including me, to realise that it wasn’t nothing that was going on. But after he said that I pretty much blanked out for 24 hours, probably because I knew I didn’t have to be in charge any more. But as soon as you can – and in my case within a day or so, all heparined up, you take it back because – lovely as everyone might be – you’re in charge of you. You might not be able to walk or even sit up, but as soon as you can talk – and luckily I could, if a little slowly for a while – you can be in charge of you.

Does that sound like a victim to you? No, me neither. And it’s been 2 years people. How long do you want to apply the label?!

Anyway, I got the jab. We also worked out I was a little older than they thought I was, but anyone else who wants to think I’m still in my 20s may go ahead with my blessing! And I wondered if I should ask them to drop the word ‘victim’ from their stroke vocabulary.

I didn’t of course. They were lovely and I didn’t really think it through very hard while I was there. But there is something utterly disempowering about attaching that label. In the same way, it feels somewhat overegging the situation to attach the word survivor in my case.

Most of us just get on with it. Simple as. No labels required.

Thanks though.

Now, apparently I worried someone enough for them to have made some calls with my last post. Apologies. I really AM fine.

And to prove it I thought it was worth sharing that tonight was my first game of netball since school (let alone post-stroke, etc.)

Here in the UK, England Netball is running an initiative called “Back to Netball“. So long as you’re over 16, you’re eligible to go along. It’s dead cheap (about £2 or £3 depending on location) and you don’t have to have ever played before. Most people played at school but not since, so it’s really mixed ability…

I found it because I was googling for netball in the area, since we all know it’s very unlikely I’m ever going to be friends with a gym. And I came across this:

If you click it you can read all about it. Anyway, I thought, “Well if she can do it, I can definitely do it,” and I have.

Not having played for cough-cough too many years, and not having the balance I used to have either (though really, I’m sure that wasn’t the problem!) I was crap. I did score a goal though and I had so much fun I almost forgot I was running around for an hour.

So there you go, I’m fine. And running around. And making a few new friends in my new, slightly less lonely city.

[And yes, I did clear it with the GP. We changed the meds today to ones I’m more comfortable with, and the haemoglobin is slowly climbing so everyone is happy and chilled!]

Another day I’ll blog on what it’s like moving yourself lock, stock and barrel to a new city, where the people you brunch, lunch and supper with are not. I’m not sure it’s part of the post-stroke story. Except of course, it probably is.

This is an interesting one. Sadly, the little science experiment is me.

Some of the details are missing. That’s because it’s easier not to explain everything so you’ll just have to take my word for it that the general jist is here.

Here’s your conundrum: what do you do with someone who is on aspirin (post-clexane and post-warfarin) to prevent the blood clot that’s still in the back of their neck from doing any more damage when you need to prevent them bleeding because they’ve just bled out so seriously that their haemoglobin is now, apparently, a worrying 7.5 instead of the 12-16 that is normal?

That’s been the issue for my GPs over the past two weeks. I use plural deliberately since they seem to be working on it together, such is the issue, apparently.

Let me backtrack.

About three weeks ago I had a bleed that I knew was all wrong and a little bit too serious. Bleeding is something I do well anyway. Cuts, bruises, nosebleeds, being a girl, my blood usually prefers to be out rather than in if it has a chance to escape… But even for me this was not good.

So I broke the habit of a lifetime, called NHS Direct and, on their instruction, got “to A&E right now and tell them you need to be seen within the next 20 minutes”. At A&E they ignored me for about an hour.

Then took some blood from me, and ignored me a little bit more. Then, when I passed out cold, they took a little notice. My blood pressure had dropped to something like 50/70 which was enough for them to start moving things along. The already installed cannular got plugged with two bags: blood products and saline, and the bleeding stopped spontaneously around 11pm, about 5 hours after it started and 3 hours after I got to A&E. They invited me to stay the night but, after ascertaining that all they were going to do was give me some drugs to take home in the morning I said I’d come back and get them and – to a nurse saying, “You’re doing exactly what I’d do in your position, just come back if anything changes,” as she handed over the AMA forms (“Against medical advice but, in your case, it’s really with medical advice”) I went home.

The next day I went back to pick up the drugs. In discussion with the pharmacist I realised that, even though the fact I’d had the stroke and was on aspirin was all over my notes, one of the two drugs I was paying for was a clotter. Brilliant. As there was no immediate problem anyway, the pharmacist and I agreed the best thing to do was take the drugs they’d just dispensed but swallow neither of them and wait until I moved home that weekend, to a new city, and take it up with a new GP.

So I moved on Saturday, got the GP on Monday and met her on Wednesday. She’s brilliant. They all are here. And I can tell you that this city well outside London does things fast… I mean fast… and they are nice to you… and sensible about things… let me explain… (the bits in brackets suggest what may have happened in London!).

Wednesday: Meet GP. She says I can’t take one of the precriptions but keep hold of the other in case I need it later, and orders scans and bloods and my notes from London. (In London, I wouldn’t have actually got in to see her yet.)

Thursday: I call the local hospital to book scan as requested. They have no record of me since I’m new to the area and haven’t been processed yet. They book the scan anyway for the following Tuesday and ask me to “just get your doctor to give you a signed form before then and bring it with you, if that’s ok?” (In London, they’d not have done a thing until I’d been on a system of some kind, I’d have had to have waited for the referral before they’d have made an appointment by letter. It would’ve been for a month later and would have been rescheduled by them later on at least once.)

Monday: bloods taken

Tuesday evening: I’ve gone back to London for a party. In the evening the GP calls to ask how I’m doing because my haeomoglobin is so low I should be feeling awful. She asks if I can come in. I explain I’m at a party. In London. And I’m fine. She asks when I’m coming back. I say just after midnight. She says fine, but come in first thing tomorrow. I get back home at 01:00. (In London, I don’t know if they’d have called or not, to be honest. I wouldn’t have gotten a first-thing appointment with her though.)

Wednesday: I see her. I get a prescription for iron, another for something to make sure I don’t bleed that’s much stronger than the one A&E gave me, and more bloods done. She asks if I’ll consider a blood transfusion. I say if I need it then fine, even if I would feel bad because the Blood Bank doesn’t want my blood any more. I collect the scrips. Later that evening I open them up and note that the one for bleeding says I can’t take it if I have had any clots in the past. I call the surgery to find out if they knew this was a contra-indicated drug.

The GP on call turns out to know all about me. “You’re the conundrum around here at the moment…” Oh great. We agree I’ll take the non-dodgy ones from A&E instead. He also makes it very clear that “while we try to keep people out of hospitals and away from A&E” that if I bleed in any way, shape or form, I’ll go to A&E and announce on arrival that my heamoglobin is 7.5 and I’m bleeding. Apparently it’s a short cut to the front of the queue. Take note if you ever need to promote yourself in line… He says he’ll call me in the morning when he’s checked it all out a bit more.

I get home and realise that the non-dodgy also say don’t take them if you’ve had a clot and are, therefore, also dodgy. I’m tired. I can’t be bothered to call back. It’s late. I do my own little risk assessment over 30 seconds: bleeding out tonight when i’m neither cut nor bleeding vs a likelihood stroke from the clot still in the back of my neck from just one or two of these white disks until we sort it? I take the tablet. And realise I don’t actually know where A&E is in this city anyway.

Thursday: The surgery is my second home. Good job I don’t feel actually crap because it’s at the top of a very steep hill. I drop in a note to say the tablets we agreed I’d take are also contra-indicated and ask if they can give it to the GP from last night before he calls back again. The GP from last night calls to see how I’m doing. He doesn’t have my note yet. They call a lot. Kind of them. Kind of weird too. But ok. We talk about the tablets and agree, on balance of risk, that I’ll take them while they figure out what to do.

Friday: GP from yesterday calls to say would it be ok if they rang my neuro in London. I give him all the details. I can recite my patient number. I think he’s surprised but hey ho. Original GP calls back a few hours later. She’s spoken to my neuro and they’ve agreed I can take the weaker tablets – the ones from A&E – but less of them and we’ll work on a better solution ASAP. I said, “oh, cool, if he’s chilled about it then so am I.” She said, “I wouldn’t say he’s chilled… he’s balancing the risk like we all are.” Yes, dear reader, I am a walking risk assessment. There is irony in that if you actually know me… She carries on, “And like me, he is asking you to be very careful not to get pregnant in the next few weeks.”

Did I mention that? Everyone going on about me not getting pregnant in the next few weeks? It comes up a lot. A lot. Like really a lot. It came up a lot on the warfarin, now it’s coming up a lot a lot. Part of you wants to say, “Um, you know how old I am, does it look like I’ve been unable to control this element of my life in the past?” but you don’t. You just say, “Yeah, ok” and realise that if you were planning on being pregnant in the next few months you would do it anyway because you know how that would be handled better than the GPs do yet, because you’ve loads of friends who’ve had strokes who’ve done this already, and the GPs have not. (I have a friend with Sickle Cell who once told me that sometimes when she has to go to A&E she wishes whoever is there would just shut up and do as she tells them because she’s been doing this consistently for quite a while and they have not… I’m starting to know how she feels.) Anyway, I digress.

The GPs also acknowledge, perhaps uncomfortably, that the end of my note includes a very clear point that – in extremis, and I mean in extremis and not anything else – I’d prefer to bleed out than stroke out. My reasoning being (a) one can feel and see a bleed and do something about it, while you don’t know about a stroke until it’s too late and (b) on an informed balance of risk issues, my family is – not happily – aware that their job if I was to suffered a very serious brain impairment is to switch me off. No heroics for me if the likelihood is permanent disability. I’ve seen people struggle with it. I don’t make judgment or take issue with anyone else’s choices or issues, but for me death is not as scary as permanent, serious brain disability. End of.

I’m starting to realise this really is a different case for the GPs here. A conundrum of preventing a good bleeder from bleeding whilst not inhibiting her anti-clotters from doing their job and not destroying her long-term fertility… oh, and she can read the drug inserts and make grown up decisions for herself too. I think they like me. I think they like the puzzle, actually.

Though I’d prefer to go back to being that boring person who doesn’t see their GP for years and then pops in for a holiday jab. Remember those days?

So, stay away from knives, tin cans with sharp edges, razors and broken glass for the near future. Being a woman, they’re already working over the compromise deal where I agree to do something that means I couldn’t get pregnant for a while even if I tried really hard, because that deals with one potential blood-loss-related issue due to gender. And I keep A&E on speed-dial until my iron levels get back to normal and we work out how to not let bleeds get out of control. I guess.

Let’s not mention to anyone that, in the process of sorting things out from the move two weeks ago, I spent quite a lot of today getting broken glass out of crevices and spaces it’d dropped into, eh? I’m really rather careful these days.

I never got one before because I didn’t need it and I’m not a natural driver. Now I’m out of London I do need it. I decided to get an automatic-only licence because, basically, it’s easy and there’s no problem getting an automatic car. Six weeks and I have a licence and a car. It’s a little Citroen C3; it’s not new but it’s very shiny and just perfect for me. And if you’ve had a stroke and are wondering if autos are easier to drive – yes, miles: no clutch and no gear changes.

So now I need a job. I’m perched in a borrowed flat while I make the move towards a new, smaller city. I’ve been freelancing for a year while I finished an MSc thesis but I want to get a mortgage asap in the new city so I need a permanent job. It’s here things get harder again.

The economy is not great, but that’s not really my issue. My issue is tiredness. I’ve really been very protected from it because I was studying and freelancing and could control my days and without even thinking about it (my neuros term, he says older people are usually protected by the fact they are retired so they don’t notice what we younger ones do). And the driving just highlights the need for no/low commute. If I drive 50 mins each way – as I would have had to do for one particular job – I’m knackered… and I need to fit 8 hours work in the middle. So I’m looking for a job with sensible hours and not too far from wherever I live. Working 40 hours a week just isn’t a problem in itself – I’ve been doing it all along. Not having control over things means I can’t control tiredness and that is.

Still… my friend, quoting the Best Exotic Marigold Hotel keeps telling me that, “Everything will turn out alright in the end, and if it’s not alright then it’s not the end.” Thoughts?